Since it is Rare Disease Month, we would like to take a moment and shine the spotlight on some of our amazing JM warriors.
First, a few terms to know when talking about Myositis Specific AutoAntibodies. So why do we talk about Myositis Specific Autoantibodies? We know that JDM is different for every child. One of the reasons it is different is because of the MSAs. Since the autoantibodies are attacking the body, by understanding these “misguided fighters,” we can understand […]
We have compiled a list of Cure JM items you can purchase, as well as other products, that might help you and your child in their JM journey.
Despite battling juvenile dermatomyositis (JDM) as a child, Alex Hackney never envisioned becoming a marathon runner, let alone completing prestigious races like the Chicago and New York Marathons. With over 15 years of grappling with JDM, Alex recently completing her third marathon and found closure and perspective in Chicago.
Each January, I share with our community a few personal New Year’s resolutions for the year ahead. I believe these resolutions help us keep a keen focus on the priorities that matter most—better treatments, better care, and a cure for JM.
Austin Krainz, diagnosed with juvenile dermatomyositis at the age of seven, overcame the challenges of a rare disease with the support of his family and pioneering treatment from Dr. Lauren Pachman. After more than a decade of battling the illness, Austin entered remission, fulfilling his childhood dream of professional racing in Porsche’s GT America series.
I am writing to wish you and your family the very best this Holiday Season. This time of year, especially, I am filled with deep appreciation for all that Cure JM families have accomplished to advance our mission, to improve the lives of children living with JM, and to support the doctors and researchers driving better treatments as we fight for a cure.
Spring break should be about fun and relaxation. Sandi and her husband Zack expected their trip to Mexico would be the same. Of course, taking their two young toddlers with them wouldn’t guarantee much relaxation, but they were counting on the fact it’d be fun for the family. From the very beginning of the trip, […]
Two special guest speakers, Michelle Vogel, MPA, IV Solutions RX, and Laurel Cherwin, BSN, RN, IgCN, Octapharma, shared information on navigating affordable treatments and care for JM patients.
You may have heard about yesterday’s FDA ruling, which approved vamorolone as an alternative steroid for use in Duchenne muscular dystrophy.
Vamorolone is a new steroid alternative with fewer side effects than prednisone. The drug aims to preserve the beneficial anti-inflammatory and muscle-strengthening characteristics of corticosteroids, while decreasing some of the unwelcome side effects, including bone fragility, delayed growth, and behavior changes.
As we learned in yesterday’s announcement, vamorolone was found to be both safe and effective as a therapy for Duchenne muscular dystrophy in its newly approved indication.
In January, Cure JM presented a town hall on the achievements of 2023 and goals for 2024.
We are continually moved by the creativity and unwavering passion that our families exude in their DIY fundraisers that make our mission possible. My Mission, My Impact, is dedicated to spotlighting some incredible events and fundraisers that breathe new life into our continued mission. The families featured have channeled their creative energy and talents to […]
A recently published study on integrating mental health care into a pediatric rheumatology specialty clinic, supported by the Cure JM Foundation, concluded that the need for mental health care is great and despite the challenges, with the coordination of various stakeholders, it is possible. Published in Frontiers, the principal authors were Dr. Susan Shenoi, a pediatric […]
It often takes a bit of time for children with juvenile myositis (JM) to get a proper diagnosis. This is due to the fact that it is rare, it comes in many different forms, and the disease looks different for each individual. Getting a diagnosis is important no matter how long the process takes. Click […]
Two Grandmother’s share their story and experience when their granddaughter Emma is diagnosed with JM.
Sari’s pain began in September of 2018, during gymnastics practice. It started in her shoulder. She didn’t give it much thought. But then it worsened, soon becoming constant. One night, she was on gymnastics bars continuing her work after practice. She wanted to execute a particular skill, but the pain stopped her from completing the […]
With the looming FDA approval of the drug vamorolone in Duchenne muscular dystrophy, there are questions surrounding the drug’s status for trials in juvenile myositis. We have consulted with JM experts on the potential implications of a pending approval for the drug in another disease and what this currently means for JM patients living in the U.S.
Our Story – Humble Beginnings Twenty years ago, Cure JM co-founders Tom and Shari Hume set up the Foundation’s first-ever DIY fundraiser to seed important new research funding. What was the fundraiser of choice? Considering the couple had young children, a lemonade stand was the perfect fit to launch a rare disease nonprofit during humble […]
With summer underway, we are honored to share our latest “Ask the Doc” Town Hall on Sun Protection Tips and Tricks for Summer. In this session, Shelia Angeles-Han, MD, MSc, and Kalyani Marathe, MD, MPH of Cincinnati Children’s Hospital, share the importance of sun protection for JM patients.
Sun Protection Tips & Tricks: What Parents, Grandparents, and Patients Need to Know
We are honored to share this insightful presentation and Q&A on the importance of exercise and nutrition in treating juvenile myositis with Dr. Brian Feldman of The Hospital for Sick Children and the Cure JM Clinical Care Network.
What role does exercise and nutrition play in JM treatment? When should JM patients be cleared for exercise? What effects do exercise and nutrition have on disease outcomes?
Juvenile Dermatomyositis: Advances in Basic Research, Translational Studies and Clinical Care May 13, 2023, at 10:00 a.m. EST 3.0 CME credits are available through Duke University Session 1 10:00 – 10:10: Opening Comments and Introduction. Nikki Hahn (Chair, Cure JM Foundation Board of Directors), Andrew Heaton Ph.D. (CSO, Cure JM Foundation) 10:10 – 10:35: Sarah […]
A clinical trial treating patients with juvenile myositis with the drug abatacept resulted in lower disease activity and clinically significant responses in most patients. The trial was conducted at the Cure JM Center of Excellence at George Washington University, and preliminary results were presented at the Global Conference on Myositis. Abatacept was generally well tolerated […]
The Chan Zuckerberg Initiative has awarded Cure JM and a consortium of Cure JM-funded researchers a coveted $2 million rare disease research grant to identify new biomarkers in JM and improve precise, personalized care through the identification of cell-to-cell interactions that drive inflammation in juvenile myositis.
Research Grants: New Grantees and Exciting Updates From Existing Grant Recipients This year saw a very strong field of grant applications across a variety of JDM research projects. Again, we saw applications spanning the globe, recognition of the Cure JM Foundation’s preeminence in JM research, and global reach. There is a robust process to rank […]
Your Participation Means a Lot to Our Success We are pleased to recognize our Parent Ambassadors for Cure JM’s Giving Tuesday Holiday Challenge. The Parent Ambassadors have stepped into a leadership role to help make the biggest day of the year a huge success for our kids. We are so grateful to all our ambassadors […]
Cure JM Executive Director, Jim Minow takes a deep dive into the key outcomes and highlights of this year’s National Family Conference.
Learn about IVIG (immunoglobulin therapy administered by vein). This session features Dr. Fatma Dedeoglu of Boston Children’s Hospital, Huub Kreuwel PhD, of Octapharma Plasma, and patient advocate, Michelle Vogel, of CSI Pharmacy.
How to apply the nutrition and exercise recommendations sometimes provided by healthcare providers and make them work for your family in the “real world.”
Explore the importance of exercise in the management of juvenile myositis. Presented by Sue Maillard, a specialist physiotherapist at Great Ormond Street Hospital, London.
This video features stretching exercises that are an important part of rehabilitation for JM patients. The video was created for Muscular Dystrophy patients, but is still applicable for JM patients.
The number of medications used to manage juvenile myositis and its side effects can be overwhelming. Cure JM developed this sample medication chart to help you stay organized.
One of the ways you can help your children cope with juvenile myositis is by giving them a sense of control over their doctor visits and treatments.
Alexandra grew up in Philadelphia. At eight years old, she was diagnosed with juvenile dermatomyositis. Her first symptom was pain in her cuticles whenever she touched something. Then came the rash, weakness, painful inflammation, and a host of other symptoms. Daily activities were painful, but the rash would be her main symptom during her over […]
Kindergarten is about making friends, learning how to count by two’s, and reading Biscuit books. But for Madi, Kindergarten was not so simple.
Cadence was only 18 months old when she was diagnosed with juvenile dermatomyositis. Her mother took her to their pediatrician’s office multiple times, only for covering nurses to misdiagnose her symptoms. “I knew something more was going on—I just did not know what,” says Stephanie, Cadence’s mom. Stephanie described Cadence’s symptoms to a physician co-worker, who […]
Cure JM was founded 19 years ago by a small group of volunteers who wanted to change the world for children with a rare disease few had ever heard of—juvenile myositis, or JM.
Nathanael was an active 7-year-old. In the summer of 2014, he played baseball under the Southern California sun, and that’s when the rash started. “He started having this weird rash on his legs,” says Maggie, Nathanael’s mom. They brushed it off as allergies and looked for the right cream, assuming it would eventually disappear. Then […]
Alexis Walker-Connor Alexis Connor is a registered nurse who has worked in adult oncology for 15 years. She is currently a stay-at-home mom to five lovely children. Alexis became a member of Cure JM in 2016 when her oldest daughter, Nylah, was diagnosed with JDM at the age of seven. After months of seeking care […]
Over ten years ago—in the spring of 2012—Brynn’s parents, Matt and Carrie, noticed a change in their daughter. Brynn had seemed like her normal four-year-old self while with her grandparents for Easter. But by May, something was different. “Our daughter, Carrie, and her husband Matt noticed that Brynn was not her active self,” says Randy, […]
Natalia is seven years old, and in January 2021, she began experiencing pain. Everyday tasks were difficult. Natalia’s parents, Lindsay and Matt, reached out to her pediatrician, who ran some bloodwork, but recommended Natalia be tested for Celiac disease. While Natalia’s blood test showed positive for Celiac disease, they would’ve had to wait weeks for […]
My grandson, Connor, was diagnosed at a very young age. Since he was two years old, he has struggled with rigorous and invasive treatments. From then on, we knew he needed to have all his family’s love and support, now more than ever. Life hasn’t been easy for him, and it breaks my heart to […]
Olivia is four years old, and she’s been fighting juvenile myositis for almost two years. At the beginning of her treatment, Olivia’s parents, Leah and P.J., felt helpless in easing her pain. They wanted to help her however they could, so they channeled their efforts. “Raising money for Cure JM helped us focus our energy […]
Leah and PJ are parents to four-year-old daughter Olivia, who has been bravely fighting JM for almost two years. Together, they lead Cure JM’s annual Giving Tuesday Fundraiser. At the beginning of treatment, Leah and PJ felt helpless in easing Olivia’s pain—so they channeled their efforts into Cure JM.
Meeting notes are posted on the Grandparent Council Bookshelf. Next Meeting: Date June 22 2023 at 3 pm EDT/2 pm CDT/1 pm MDT/12 pm PDT The March Grandparents Council (GPC) meeting was held on May 25, 2023, at 3 pm EDT. These meeting notes will be posted in the Grandparent Council Bookshelf on google docs, along with previous […]
JOIN US! Two Upcoming Events for Juvenile Dermatomyositis Families & Patients Online Town Hall Friday June 2nd 1:00 p.m. Eastern Sun Protection Tips & Tricks for Summer PRESENTED BY Sheila Angeles-Han MD, MSc Physician, Division of Rheumatology Cincinnati Children’s Hospital Medical Center Kalyani S. Marathe, MD, MPH Division Director of Dermatology Cincinnati Children’s Hospital Medical […]